04
Apr
2019

Malan syndrome

04
Apr
2019

Malan syndrome

Questionnaires and Scorecards

Nobody with Malan syndrome is the same! It is important to understand how healthy you are and who you are! Our community provides questionnaires and scorecards that help you to discover how Malan syndrome has impacted your life, how you develop1
When you discover which aspects of Malan syndrome impact your life, we will provide links to fitting information to allow you to develop your personal health system. This saves you from digesting information you do not need directly, keeping your head free, to allow you to enjoy life and give you just that little bit of extra support.

Because if there is something typical for families with a care-intensive2 person having Malan syndrome, is that you will see similarities with others having Malan syndrome, but that you will also see where you are special. Finding your friend that really matches your lifestyle, has dealt with the same challenges can be improved by finding these people with Malan syndrome that have approximately provided the same answers to our questionnaires and have similar scorecards.

Malan syndrome is a congenital disorder named after the French geneticist Malan who described this for the first time. Characteristics of Malan syndrome are a typical face, tall stature, disturbed speech and a impaired cognition which varies in severity.

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  1. ^
    • Your answers and information is yours and yours only.
    • we create a privat space for you only!
    • Your data can only be shared by yourself, not even by us! 
    • your information; you can use it whenever you need it! Often people with Malan syndrome are asked to fill in same like questionnaires again, no more, reuse the information you already have in your privat space.
  2. ^
    • care-intensive: people are special, they are not Malan syndrome but a unique person
    • care-intensive:A care-intensive person is somebody with a physical, mental or behavioural disability (or a combination thereof) and being seldom seen as Malan syndrome there is a lot of unknown's,
    • care-intensive: Because of the rare aspect of Malan syndrome family members are often, (forced to be), the advocate that needs to ask these questions for the better of their family member (or themselves!),
    • care-intensive: a word that we came up with, with which we focus on the experience of the care with Malan syndrome rather than the diagnostics.
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All of the information contained within these questions and answers is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

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